There are some important ethical considerations in collecting, working with and storing data, which are briefly discussed below.
It is important that participants understand what information is being requested and why, in order to provide informed consent, which is a voluntary agreement to participate in research. This must be based on adequate knowledge and understanding of the proposed research and what will be expected of participants. Consent can be verbal or written, depending on which is most appropriate for the particular type of research.
Consent with minors is particularly important. For clinical work, a mature minor is considered to be between 8-15 years, but capable of making decisions and understanding implications, and 16+ is considered able to consent to treatment independently. For research, you may need to obtain consent from parents or guardians for any participants under 18 years, and where parents are separated, it is good practice to try to obtain consent from both parents if possible.
In general, it is good practice to keep all participant data confidential as much as possible. However, there are reporting requirements for funding bodies, including DSS and any limits of confidentially need to be discussed with clients. It is important to think about your participants, and whether you have multiple clients, especially if working with families. You will need to think about your responsibilities to each client, and discuss any potential difficulties, using some form of plain language statement to ensure they are aware of any limits of confidentiality, including where you are obliged by law to report specific issues that may arise.
It is important to be aware of any potential issues that may be sensitive for clients, and to discuss this early and openly in the consent process.
You will need to have a system in place to securely retain your data, including both electronic and paper based records. Different organisations may have a range of processes, and you should be aware of how long you are required to retain data. As good practice, you should also always maintain multiple backups of your data, in case of system errors.
Maintaining participant privacy and confidentiality is a key priority for all evaluation projects at CFRE. Our data management strategies align with the Privacy and Data Protection Act 2014, as well as the guidelines put forward by the Australian Code for the Responsible Conduct of Research. Unless otherwise specified, data that CFRE use in reporting is appropriately de-identified and presented as part of an aggregated response.